Search

This review updated a previous review [Gaugler JE (2005) Family involvement in residential long-term care: a synthesis and critical review. Aging and Mental Health 9 , 105–118] and focused on dementia. Fourteen years of development in family involvement with care homes following placement of a relative was explored. The review aimed to investigate two questions: (1) What types of involvement do families have with care homes following placement of people living with dementia? (2) Which factors influence family involvement with care homes? PsycINFO, MEDLINE and CINAHL Plus were searched for publications between January 2005 and December 2018. Thirty-three papers representing 30 studies were included. Papers were appraised using a quality rating tool designed for use with mixed study designs. Studies were of a reasonable quality though some weaknesses included single-site samples, high attrition rates and poor reporting. Twenty-eight papers highlighted types of involvement including collaboration, family–staff relationship development, decision making and visiting. Twenty-five papers pertained to factors influencing involvement, which included outcome of care quality evaluation, wish for recognition and sense of integration into the care team. Type of family involvement has changed over time with increased emphasis on families' desire for partnership, to be active rather than passive advocates, and to focus on care monitoring and evaluation. Seven themes of family involvement activities are featured and a non-linear process is proposed. When compared to patient and family-centred care principles, an analysis of family involvement types found good fit overall and potential for framework improvements. Over 30 diverse factors influence inter-family variation in the level and nature of family involvement. Consideration of these factors and resolution of the gaps in evidence, including intergenerational and cultural concerns, can improve care home facilitation of family participation. This dementia-specific review is a comprehensive timely complement to Gaugler's seminal work about older adults in care. [ABSTRACT FROM AUTHOR]

Caring for a relative with dementia can be extremely challenging especially when someone presents with behavioural and psychological symptoms of dementia (BPSD). The training provided to informal carers is varied and inconsistent. Group-based training programmes are often prescribed but their impact on care-recipient wellbeing and symptomology is yet to be well established. This review synthesises the literature on consensus, themes and effectiveness of informal-carer, group-based educational training programmes on BPSD symptoms. Ten papers were included of which very few considered BPSD outcomes as their primary aim of investigation. Methodological and theoretical approaches across the empirical papers varied considerably. Generally, studies of higher quality and with some positive results on BPSD outcomes tended to incorporate teaching on structured problem-solving skills. Studies measuring for longer term changes also tended to conclude more beneficial outcomes. The length and duration of groups and the group-sizes appeared inconsequential to BPSD outcomes. The empirical evidence is weak for carer group interventions in the management of BPSD. Practice reasons for this are discussed. Future studies designed to measure BPSD as a primary outcome would be a welcome addition to the literature. [ABSTRACT FROM AUTHOR]

Background: Behavioural and psychological symptoms of dementia are a group of non‐cognitive symptoms such as agitation, physical aggression, depression, sexual disinhibition and psychosis. Therapeutic approaches vary because of the multifactorial and complex symptomology. The researchers of this study aimed to systematically review the nonpharmacological interventions for BPSD used by nurses in acute and subacute hospital settings. Design: The PRISMA guidelines guided this systematic review. The review was registered with PROSPERO (CRD42020184015). Method: The databases Cumulative Index of Nursing and Allied Health Literature (CINAHL) complete, Medline complete, Excerpta Medica (Embase®) and PsycINFO published by the American Psychological Association (APA) were searched for studies published in English to October 2021. Quality appraisal was performed independently by three reviewers using the Critical Appraisal Skills Program tools. Data were synthesized using a narrative approach. Results: Two studies were identified that focused on interventions used by nurses; findings were positive for the use of nonpharmacological interventions to manage BPSD. Conclusion: Current evidence suggests that nonpharmacological interventions are the best practices to manage BPSD. However, limited, and low‐quality evidence suggests that further investigation is required to understand the factors contributing to the lack of use of nonpharmacological interventions by nurses in acute and subacute hospital settings. Summary statement: What is already known about this topic? Behavioural and psychological symptoms of dementia (BPSD) occur for approximately 95% of patients diagnosed with dementia and significantly impact individuals, families, communities and healthcare systems.Due to the limited benefits and potential harm of pharmacological interventions, nonpharmacological interventions are considered the first line of treatment to manage BPSD in clinical practice.Previous systematic reviews were limited to interventions implemented by a multidisciplinary team or nonpharmacological therapies conducted mainly in a residential or long‐term care setting.What this paper adds? The existing body of evidence ascertains nonpharmacological interventions are effective in managing BPSD in patients with dementia.The authors of this review identified a gap in research for the nonpharmacological interventions used by nurses in acute and subacute hospital settings.The implications of this paper: This systematic review acknowledges the effectiveness of nonpharmacological interventions to reduce aggression and agitation in patients with dementia.It highlights two major gaps in the research: that there are very few studies conducted in hospital settings, and no studies report the use of nonpharmacological interventions by nurses on any symptoms of BPSD other than aggression in the hospital setting. [ABSTRACT FROM AUTHOR]

This scoping review aims to examine the caregiving experiences of Korean American caregivers of persons with dementia. A comprehensive electronic search was conducted within 5 databases (PubMed, CINAHL, Web of Science, Embase, PsycINFO-ProQuest) for papers published from 01/01/00 −01/24/22. Seventeen articles met the inclusion criteria. Thematic analysis was used to summarize key findings from these papers. Most Korean American dementia caregivers were immigrants and wives/daughters/daughters-in-law. Two themes emerged: 1) how Korean American caregivers perceived their caregiving experiences, and 2) how Korean American caregivers perceived their caregiving support services. Korean American caregivers often experience poor mental health and burden. Social support and familism were found to be two of the most important factors that determine their attitudes toward caregiving. Most reported barriers to utilizing public services. Challenges in finding culturally relevant resources were common. Dementia caregiving is a significant public health problem facing Korean Americans. Recommendations for future research are provided. [ABSTRACT FROM AUTHOR]

Background: Cognitive–communication difficulties are often associated with dementia and can impact a person's ability to participate in meaningful conversations. This can create challenges to families, reflecting the reality that people living with dementia rarely have just one regular conversation partner, but interact with multiple family members. To date, there is limited evidence of the impact of changes in communication patterns in families. A family systems approach, with foundations in psychology, can be used to explore the impact of communication difficulties on multiple different family members, including the person living with dementia and potential coping strategies used by individuals, together with the family as a whole. Methods & Procedures: A systematic review of primary qualitative research was conducted to identify and examine research exploring communication and interaction within families living with dementia. Studies were identified through a comprehensive search of major databases and the full‐text articles were subject to a quality appraisal. We conducted a thematic analysis on the literature identified to consider the role of families in supporting communication for people with dementia. Outcomes & Results: The searches identified 814 possible articles for screening against the eligibility criteria. Nine articles were included in the final review. Three major themes emerged from the analysis of the included studies: (1) 'identities changing' reflected how interactions within the family systems impacted on identities; (2) 'loss' reflected the grief experienced by families due to changes in communication; and (3) 'developing communication strategies' highlighted strategies and approaches that families affected by dementia may use organically to engage in meaningful interactions and maintain connection. Only one study explicitly used a family systems approach to understand how families manage the changes in interaction resulting from dementia. Conclusions & Implications: The findings may usefully inform the clinical practice of speech and language therapists in terms of communication strategies and coping mechanisms that may be advised to facilitate connection in families living with dementia. Further research using a family systems approach to exploring communication in dementia may help to support the implementation of family‐centred practice as recommended in policy. What this paper adds: What is already known on the subject: There is increasing recognition of the impact of dementia on whole families and the need for family‐centred interventions to enhance quality of life. However, much of the research to date that explores communication within families affected by dementia examines interaction between dyads, largely overlooking the roles and skills of other familial communication partners. To the authors' knowledge, there has been no previous review of the literature using a family systems approach, which has the potential to inform clinical practice of those working in dementia care. What this paper adds to existing knowledge: The review examines and understands what is known about the approaches used by families affected by communication changes resulting from dementia to preserve connection. It collates the evidence from qualitative studies examining approaches and strategies used by individual conversation partners, including people with dementia, as well as the family system as a whole, to facilitate meaningful interactions, and proposes recommendations for clinicians working in this field. Furthermore, we consider the potential benefits of using a family systems approach to understand the context of people living with dementia and how this could enhance communication, personhood and well‐being. What are the potential or actual clinical implications of this work?: This review highlights practical conversation strategies and interactional approaches that may serve to enhance communication and preserve relationships between people with dementia and their family members. Such techniques have the potential to be advised by Speech and Language Therapists working in dementia care as part of tailored, relationship‐centred care and support that they provide. [ABSTRACT FROM AUTHOR]

Background: As the prevalence of dementia increases, the need for appropriately trained and skilled care teams also increases. Staff attitudes towards people living with dementia have a significant impact on caregiving behaviours and staff and resident outcomes. Training within care settings is a potential way of improving staff attitudes towards residents in their care. Objectives: This review aimed to (i) assess the effectiveness of psychosocial training in improving care staff attitudes towards dementia; and (ii) examine the content and focus of training. Method: The review was conducted following PRISMA guidance and the protocol was registered on PROSPERO prior to conducting the review. A comprehensive search of peer‐reviewed literature was undertaken using CINAHL, Medline and PsycINFO from inception to March 2021. All papers were evaluated using a quality appraisal tool. Results: Ten studies met inclusion criteria and were of variable quality. However, six studies found significant improvements in staff attitudes towards dementia following staff training. The studies varied in terms of training focus and included behavioural, communication and cognitive‐based approaches. Conclusions: Staff training could be an effective method of improving staff attitudes towards dementia in care settings. Further research adopting high‐quality randomised controlled designs to further explore staff attitudes following psychosocial training would make a valuable contribution to the literature base. [ABSTRACT FROM AUTHOR]

Informal caregivers of dependants with dementia commence their bereavement experience long before the physical death of their dependant, a process referred to as "anticipatory grief". This represents an ambiguous state that has been acknowledged as a measurable variable among informal caregivers. The use of assessment tools for the identification of anticipatory grief is important for timely intervention to promote well-being and positive bereavement experiences. The aim of this systematic review is to identify and examine existing tools for assessing anticipatory grief among caregivers of dependants with dementia MEDLINE, EMBASE, PsychINFO, CINAHL and Web of Science were searched to July 2021. Studies focusing on the development/evaluation of instruments for measuring anticipatory grief in dementia caregivers were eligible. The quality of each measurement was graded as positive, fair, poor or no information based on defined criteria. 100 studies were identified. 33 papers were selected for full-text assessment and 12 papers met the eligibility criteria. Seven assessment tools were identified for measurement of pre-death grief caregivers – the Anticipatory Grief Scale (AGS), Marwit-Meuser Caregiver Grief Inventory (MM-CGI), MM-CGI-short-form (MM-CGI-SF), MM-CGI-brief (MM-CGI-BF), Prolonged Grief Scale (PG-12), Caregiver Grief Scale (CGS) and Caregiver Grief Questionnaire (CGQ). Based on content/construct validity, internal consistency and test-retest reliability the MM-CGI/MM-CGI-SF scored highest for quality followed by the CGS. Anticipatory grief in dementia has multiple facets that can be measured using self-scoring questionnaires. Our findings provide support for different measures of anticipatory grief. Further research is needed for the evaluation of the responsiveness and interpretability of these instruments. [ABSTRACT FROM AUTHOR]

Dementia, a global health priority, poses a disproportionately high risk to lesbian, gay, bisexual and trans plus (LGBT+)/gender and sexuality diverse people. Despite this, little research has explored the lived experience of LGBT+ people with dementia or their care partners. This scoping review aims to understand what the literature reveals about their experiences, the ways in which their lives have been investigated, to inform future research, policy and practice. Using an established scoping review methodology, we identified seven papers that reported empirical research on the lived experience of LGBT+ people with dementia and their care partners. Only a single study reported on in two of the papers included people who were trans. This in itself reveals how rarely LGBT+ people are asked to speak about how dementia has shaped their lives in academic research. Our reflexive thematic analysis indicates that LGBT+ people with dementia and their care partners endure overlapping forms of disadvantage. This results in heightened experiences of fear and discrimination, lack of services and compounded social isolation. Importantly, while dementia was embodied as interference and loss by LGBT+ people, it was their gender and sexuality differences that provided solace, even in the face of disadvantage. Importantly, people's relationships with LGBT+ identities were framed as fundamental for safety, resilience and wellbeing, rather than a complicating or confounding factor in living with dementia. [ABSTRACT FROM AUTHOR]

Introduction: High-quality randomised controlled trials (RCTs) of interventions are essential for determining whether an intervention is effective. However, many RCTs that examine the effectiveness of occupational therapy interventions for adults with mental health conditions or dementia have methodological limitations that reduce confidence in their results. We aimed to systematically review the quality of methods and outcome measures used in RCTs of occupational therapy interventions for adults with a mental health condition or dementia. This will inform future research in this area and enable practitioners to appraise the evidence when selecting interventions. Method: We searched peer-reviewed English language publications from 2000 to 2021 in MEDLINE, PsycINFO, ASSIA, CINAHL and e-thos, and hand-searched 12 journals. We included papers that met pre-specified inclusion criteria, appraised quality using a validated tool and extracted data. We conducted a narrative synthesis. Results: Of thirty-three included papers, 26 reported full or pilot RCTs, two reported secondary analysis or secondary outcomes of included RCTs, three reported process evaluations and two reported economic evaluations. Methodological limitations were found in many studies and outcome measures varied in their psychometric quality. Conclusion: High-quality RCTs of occupational therapy interventions are needed for adults with mental health conditions and dementia. Researchers should follow international guidelines for rigorously developing and evaluating interventions and reporting studies. Practitioners should critically apply RCT evidence when selecting occupational therapy interventions. [ABSTRACT FROM AUTHOR]

Despite apparent need, many older people with cognitive impairment and/or mental health needs do not fully engage with social care. This can manifest in different ways, including passive or aggressive attempts to avoid or repel care workers. However, little is known about how to support such individuals in their own homes and deliver effective care. Against this background, we undertook a scoping review with a view to developing a preliminary theory of change suggesting how care might be modified to engage this client group. The most recent search was conducted on 21/04/21. Papers were included if they (i) focused on older people (65+) living at home with social care needs and (ii) described difficulties/problems with the provision/receipt of social care associated with individuals' mental health needs. Twenty‐six citations were identified through electronic database searches and reference screening, and the results were charted according to key theory of change concepts (long‐term outcomes, preconditions, interventions, rationale and assumptions). All the included papers were related to people with dementia. Four subgroups of papers were identified. The first highlights those external conditions that make it more likely an intervention will be successful; the second describes specific interventions to engage older people who by virtue of their mental health needs have not engaged with social care; the third explores what services can be done to increase service uptake by older people with mental health needs and their caregivers more generally; and the fourth details theoretical approaches to explaining the behaviour of people with dementia. Each provides information that could be used to inform care delivery and the development of interventions to improve engagement with health and social care for these individuals. The study concludes that different framing of engagement difficulties, such as that offered through positioning theory, may assist in future service design. [ABSTRACT FROM AUTHOR]

Background: Recent evidence suggests that speech substantially changes in ageing. As a complex neurophysiological process, it can accurately reflect changes in the motor and cognitive systems underpinning human speech. Since healthy ageing is not always easily discriminable from early stages of dementia based on cognitive and behavioural hallmarks, speech is explored as a preclinical biomarker of pathological itineraries in old age. A greater and more specific impairment of neuromuscular activation, as well as a specific cognitive and linguistic impairment in dementia, unchain discriminating changes in speech. Yet, there is no consensus on such discriminatory speech parameters, neither on how they should be elicited and assessed. Aims: To provide a state‐of‐the‐art on speech parameters that allow for early discrimination between healthy and pathological ageing; the aetiology of these parameters; the effect of the type of experimental stimuli on speech elicitation and the predictive power of different speech parameters; and the most promising methods for speech analysis and their clinical implications. Methods & Procedures: A scoping review methodology is used in accordance with the PRISMA model. Following a systematic search of PubMed, PsycINFO and CINAHL, 24 studies are included and analysed in the review. Main Contribution: The results of this review yield three key questions for the clinical assessment of speech in ageing. First, acoustic and temporal parameters are more sensitive to changes in pathological ageing and, of these two, temporal variables are more affected by cognitive impairment. Second, different types of stimuli can trigger speech parameters with different degree of accuracy for the discrimination of clinical groups. Tasks with higher cognitive load are more precise in eliciting higher levels of accuracy. Finally, automatic speech analysis for the discrimination of healthy and pathological ageing should be improved for both research and clinical practice. Conclusions & Implications: Speech analysis is a promising non‐invasive tool for the preclinical screening of healthy and pathological ageing. The main current challenges of speech analysis in ageing are the automatization of its clinical assessment and the consideration of the speaker's cognitive background during evaluation. WHAT THIS PAPER ADDS: What is already known on the subject: Societal aging goes hand in hand with the rising incidence of ageing‐related neurodegenerations, mainly Alzheimer's disease (AD). This is particularly noteworthy in countries with longer life expectancies. Healthy ageing and early stages of AD share a set of cognitive and behavioural characteristics. Since there is no cure for dementias, developing methods for accurate discrimination of healthy ageing and early AD is currently a priority. Speech has been described as one of the most significantly impaired features in AD. Neuropathological alterations in motor and cognitive systems would underlie specific speech impairment in dementia. Since speech can be evaluated quickly, non‐invasively and inexpensively, its value for the clinical assessment of ageing itineraries may be particularly high. What this paper adds to existing knowledge: Theoretical and experimental advances in the assessment of speech as a marker of AD have developed rapidly over the last decade. Yet, they are not always known to clinicians. Furthermore, there is a need to provide an updated state‐of‐the‐art on which speech features are discriminatory to AD, how they can be assessed, what kind of results they can yield, and how such results should be interpreted. This article provides an updated overview of speech profiling, methods of speech measurement and analysis, and the clinical power of speech assessment for early discrimination of AD as the most common cause of dementia. What are the potential or actual clinical implications of this work?: This article provides an overview of the predictive potential of different speech parameters in relation to AD cognitive impairment. In addition, it discusses the effect that the cognitive state, the type of elicitation task and the type of assessment method may have on the results of the speech‐based analysis in ageing. [ABSTRACT FROM AUTHOR]

Background: There has been considerable focus on the use of psychotropic agents in people living with dementia in long-term care. However, psychotropic use often commences well before transitioning to long-term care. Objectives: To synthesize the available literature to identify factors associated with psychotropic medication use in people living with dementia in the community. Methods: This PROSPERO-registered review reports findings from a comprehensive search of Embase, PsycINFO, and PubMed (including MEDLINE) databases according to predefined inclusion and exclusion criteria (2010–2022). Inclusion criteria were original prospective or retrospective design research papers enrolling people diagnosed with dementia utilizing a psychotropic medication and living at home. Quality and risk of bias was assessed Newcastle–Ottawa Quality Assessment Scale. The last search was conducted in November 2022. Thematic analysis was used to synthesize the emergent factors identified, and a meta-analysis was undertaken on suitable data. Results: The search identified 619 articles. After review and exclusions, 39 articles were included for synthesis, including 1,338,737 people. The majority of papers (67%) were rated as low risk of bias and corresponding good quality. Thematic analysis suggested associations between psychotropic prescribing and patient and environmental factors, with little data concerning carer and prescriber factors. Such factors included age (< 75 years, > 90 years), sex, more advanced functional decline, and living alone. Meta-analysis identified significant associations between psychotropic use and respite (temporary full-time care or hospitalization) and comorbid psychiatric illness. Conclusions: While it is clear from this review that there remains a significant lack of clarity as to the reasons why these medications are being utilized in this population, this review provides greater insight and understanding into the context of psychotropic use. The study has highlighted an opportunity for further targeted research to be conducted and provides a much-needed context for this to occur. PROSPERO Registration Number: CRD42021286322. [ABSTRACT FROM AUTHOR]

What is Known on the Subject: Research has shown effectiveness of nonpharmacological interventions in improving or maintaining cognition, mood, functioning, self‐efficacy and quality of life for persons with mild‐to‐moderate dementia (PWDs).These interventions are critical during the earlier stages of dementia. However, Canadian and international literature report underutilization of and difficulty accessing the interventions. What this Paper Adds to Existing Knowledge: To our knowledge, this is the first review that explored factors influencing seniors' utilization of nonpharmacological interventions in the earlier stages of dementia. This review contributed to the discovery of unique factors such as PWDs' beliefs, fears, perceptions, and acceptability of nonpharmacological interventions and environmental influences on intervention provision.PWDs' intervention uptake may appear as a matter of personal choices related to individuals' knowledge, beliefs and perceptions. However, the analysis of the research evidence suggests that PWDs' choices are shaped by environmental factors such as formal and informal caregiver support, acceptability and accessibility of nonpharmacological interventions, dementia care workforce, community's attitudes towards dementia and funding. The complex interplay among factors highlights the importance of targeting health promotion strategies at both individuals and their environments. What are the Implications for Practice: The review findings feature opportunities for healthcare practitioners, including mental health nurses, in advocating for PWDs' evidence‐informed decision‐making and access to desired nonpharmacological treatments. Involvement of patients and families in care‐planning through ongoing assessment of health and learning needs, as well as enablers and barriers to using interventions, continuing information provision, and personalized referrals to appropriate services can promote PWDs' rights to healthcare. Introduction: Despite the significance of nonpharmacological interventions in optimal management of mild‐to‐moderate dementia, it remains unclear in the literature how persons with mild‐to‐moderate dementia (PWDs) view, understand and access nonpharmacological interventions. Aim: The purpose of this review was to explore the extent and nature of evidence concerning factors that influence the use of nonpharmacological interventions for community‐dwelling seniors with mild‐to‐moderate dementia. Method: An integrative review was undertaken following Toronto and Remington (A step‐by‐step guide to conducting an integrative review, 2020)'s instruction which expanded Torraco (Human Resource Development Review, 2016, 15, 404)'s and Whittemore and Knafl (Journal of Advanced Nursing, 2005, 52, 546)'s guidance. Results: The review of 16 studies suggests that PWDs' use of nonpharmacological interventions is shaped by a complex interplay of various personal, interpersonal, organizational, community and political influences. Discussion: The findings highlight the complex, interrelated relationships among multiple factors and subsequent limitations of behaviour‐oriented health promotion strategies. To assist PWDs in making healthier choices, health promotion strategies need to direct attention to both individuals' behaviours and environmental conditions impacting the behaviours. Implications for Practice: The findings of this review can inform multidisciplinary health practitioners' (including mental health nurses) practice with seniors living with mild‐to‐moderate dementia. We recommend actionable ways in which they can empower patients and their families in dementia management. [ABSTRACT FROM AUTHOR]

Background: The association between belonging to a disadvantaged socio-economic status or social class and health outcomes has been consistently documented during recent decades. However, a meta-analysis quantifying the association between belonging to a lower social class and the risk of dementia has yet to be performed. In the present work, we sought to summarise the results of prospective, longitudinal studies on this topic. Methods: We conducted a systematic review and meta-analysis of prospective, longitudinal studies measuring the association between indicators of social class and the risk of all-cause/Alzheimer's dementia. The search was conducted in four databases (Medline, Embase, Web of Science and PsychInfo). Inclusion criteria for this systematic review and meta-analysis were: (a) longitudinal prospective study, (b) aged ⩾60 years at baseline, (c) issued from the general population, (d) no dementia at baseline and (e) mention of social class as exposure. Exclusion criteria were: (a) study of rare dementia types (e.g. frontotemporal dementia), (b) abstract-only papers and (c) articles without full text available. The Newcastle–Ottawa scale was used to assess the risk of bias in individual studies. We calculated the overall pooled relative risk of dementia for different social class indicators, both crude and adjusted for sex, age and the year of the cohort start. Results: Out of 4548 screened abstracts, 15 were included in the final analysis (76,561 participants, mean follow-up 6.7 years (2.4–25 years), mean age at baseline 75.1 years (70.6–82.1 years), mean percentage of women 58%). Social class was operationalised as levels of education, occupational class, income level, neighbourhood disadvantage and wealth. Education (relative risk (RR)=2.48; confidence interval (CI) 1.71–3.59) and occupational class (RR=2.09; CI 1.18–3.69) but not income (RR=1.28; CI 0.81–2.04) were significantly associated with the risk of dementia in the adjusted model. Some of the limitations of this study are the inclusion of studies predominantly conducted in high-income countries and the exclusion of social mobility in our analysis. Conclusions: We conclude that there is a significant association between belonging to a social class and the risk of dementia, with education and occupation being the most relevant indicators of social class regarding this risk. Studying the relationship between belonging to a disadvantaged social class and dementia risk might be a fruitful path to diminishing the incidence of dementia over time. However, a narrow operationalisation of social class that only includes education, occupation and income may reduce the potential for such studies to inform social policies. [ABSTRACT FROM AUTHOR]

Post‐traumatic stress disorder (PTSD) is associated with cognitive dysfunctions and is an independent risk factor for dementia. A recent study has found the prevalence of PTSD in people with dementia is 4.7%–7.8%. However, little is known about the effectiveness of PTSD treatment for people with dementia. The primary aim of the current study is to review previous studies on the treatment of PTSD in people with dementia. A structured literature review was performed using a 'Preferred Reporting Items for Systematic Reviews and Meta‐Analyses' analysis in PubMed, Embase, PsycINFO and CINAHL. Two independent researchers screened titles and abstracts. The inclusion criteria were: PTSD symptoms present, diagnosis of dementia, PTSD treatment form described and effects of the treatment mentioned. Articles that matched these criteria were included and content and quality were analyzed. We included nine articles, all case reports, with a total of 11 cases. The discussed treatment options are eye movement desensitisation and reprocessing (EMDR) (n = 3), prolonged exposure (n = 1), cognitive behavioural therapy (n = 1) and pharmacological treatment (n = 4). All articles reported a positive effect of the intervention on several monitored symptoms. Evidence for positive effects and feasibility of EMDR were most reliable, and it was applied in two articles of sufficient quality published in 2018 and 2019. EMDR 'on‐the‐spot' was described with positive effect in one article in which three cases were discussed. The quality of included papers ranged from insufficient to sufficient. This review shows that people with PTSD and dementia can benefit from PTSD treatment. EMDR, prolonged exposure, acceptance and commitment therapy and pharmacological treatment are applicable in this population. EMDR treatment is most described in this population (n = 5) and shows positive results, and the studies are of sufficient quality (n = 3). Further research in the form of a randomised controlled trial is required to study the effectivity of different treatment interventions in this population. [ABSTRACT FROM AUTHOR]

To explore the preferences of people with memory complaints (PwMC) and their significant others regarding starting a diagnostic trajectory for dementia. A systematic literature search was conducted in PubMed, PsycINFO, CINAHL, Web of Science, and Embase. Selection of abstracts and papers was performed independently by two researchers. Methodological quality was assessed with the Mixed Method Appraisal Tool. Result sections of the selected papers were thematically synthesized. From 2497 citations, seven qualitative studies and two mixed methods studies published between 2010 and 2020 were included. Overall quality of the studies was high to moderate. A thematic synthesis showed that preferences for starting a diagnostic trajectory arose from the feeling of needing to do something about the symptoms, beliefs on the necessity and expected outcomes of starting a diagnostic trajectory. These views were influenced by normalization or validation of symptoms, the support or wishes of the social network, interactions with health care professionals, the health status of the PwMC, and societal factors such as stigma and socioeconomic status. A variety of considerations with regard to decision-making on starting a diagnostic trajectory for dementia were identified. This emphasizes the need to explore individual preferences to facilitate a timely dementia diagnosis. [ABSTRACT FROM AUTHOR]

Accessible summary: What is known on the subject?: Dementia affects an increasing number of people and a person with dementia requires significant levels of care.Dementia care is often delivered by family members.Caring for someone with dementia places significant demand on the carer and support for the carer is often needed. What the paper adds to existing knowledge?: Research has been conducted into caregivers' experiences of caring for someone with dementia, but a synthesis of findings for studies from the UK is needed to collate the research evidence and provide an account of the common trends within the existing research.This paper adds to existing knowledge by highlighting the key difficulties experienced by carers of a person with dementia in their caring role and their experiences with support services across the existing research evidence. What are the implications for practice?: Improvements to the process of dementia assessment and the process of receiving a dementia diagnosis are needed.Information and support needs to be more accessible for the carer of a person with dementiaCultural differences need to be acknowledged in the support and information offered to carers of a person with dementia. Aim: To understand the experiences of informal carers' of individuals with dementia in the UK when engaging with services for support in their caring role. Methods: Following the PRISMA guidelines, a qualitative systematic literature review was carried out. Six Internet databases were searched. Results were screened, and eligible studies were appraised using Critical Appraisal Skills Programme (CASP, 2019) and data synthesized using Evan & Pearson (2001) and Evans (2002). Results: The search returned 231 records, 11 were selected for critical appraisal and data synthesis. Four main themes (information for carers, process of diagnosing dementia, difficulties accessing support and cultural differences of experiences of services) were extracted. Discussion: Carers experience services as providing inadequate support for the Person with Dementia (PwD) and themselves for support relating to dementia. Difficulties in receiving information and support were experienced from before diagnosis to end‐of‐life (EoL) care. Additionally, cultural differences were found in carers' experiences. Implications for practice: The provision of and access to dementia support should be improved; more information for carers about dementia and dementia services is needed; cultural differences need to be appreciated in the support and information offered. [ABSTRACT FROM AUTHOR]

Objective: To investigate how religion influences care pathways for black and minority ethnic individuals with dementia. We conducted a systematic search of the literature to explore how religion affects later presentation to care services, absence of care-seeking and dissatisfaction with care. Exclusion and Inclusion criteria were applied to the research literature. Qualitative and quantitative papers were included. Included studies were assessed independently by four authors according to quality criteria. Two US studies adhered to the final screening stage. Findings from these papers postulated that religion influences care in two polarised ways: (1) Religion hinders access to the traditional health care pathway. (2) Religion assists in positive coping. Collaboration between religious institutions and health care providers is required to improve care referral, provide information dissemination and relieve care-giver burden. UK research in this area is necessary. [ABSTRACT FROM AUTHOR]

Purpose -- Recent changes affecting state pension age, and earlier diagnosis, will result in more people with dementia in employment. The purpose of this paper is to establish the nature of support that would enable/ enables people with dementia or mild cognitive impairment to continue employment post diagnosis. Design/methodology/approach -- An integrative review was carried out supported by information derived from a thematic analysis of data from interviews with seven relatives supporting a younger person with dementia and one person with dementia. Findings -- Six papers were identified for inclusion in the review. Findings from the published papers and interviews indicated that work is a significant issue for people with dementia highlighting problems with job retention, work performance and the impact of diagnosis. Research limitations/implications -- The review highlighted a dearth of high-quality research in the area. Although employment was not the main focus of the interviews, the extracts highlight some of the challenges that face people who develop dementia while of working age, their families, and employers. Practical implications -- Vocational rehabilitation is primarily carried out by allied health professionals; however, there is a lack of research evidence relating to people with dementia in the workplace. Further research is needed in order to inform future practice. Social implications -- Loss of employment deprives families of financial security and employers of a skilled employee. Originality/value -- This is the first review to focus on dementia in employment, providing a starting point on which to base future research in this area. [ABSTRACT FROM AUTHOR]

Background: The prevalence of dementia is increasing, bringing a range of challenges, such as eating, drinking and swallowing (EDS) difficulties, that are associated with aspiration, which can be fatal. Early identification of EDS difficulty in early‐stage dementia could prevent complications, but reliable indicators are needed to help develop pathways to support the diagnosis. Previous reviews of this area require updating. Aims: To identify reliable and clinically measurable indicators of EDS difficulty used in early‐stage dementia. Methods & Procedures: A systematic search was conducted using common databases (MEDLINE, EMBASE and PsychInfo). Articles reporting indicators of EDS difficulty in early‐stage dementia or mild cognitive impairment were included. The reliability of included studies was critically appraised using the risk of bias tools. Study outcomes were narratively reviewed by considering the reliability, clinical measurability and applicability of EDS indicators to early‐stage dementia. Outcomes & Results: Initial searches returned 2443 articles. After removing duplicates, limiting to English language and human studies, 1589 articles remained. After reviewing titles, 60 abstracts were reviewed, yielding 18 full‐text articles. A total of 12 articles were excluded that did not report at least one indicator of EDS difficulty in early‐stage dementia, or where the reported association was not strong. Six included studies that reported eight indicators of EDS difficulty in early‐stage dementia (four studies including people with Alzheimer's disease). On the balance of measurability, reliability and applicability, the most promising indicators of EDS difficulty were: delayed oral transit, rinsing ability, sarcopenia and polypharmacy. Additional, less reliable and applicable indicators included: always opened lips and non‐amnestic mild cognitive impairment, especially in men. The delayed pharyngeal response is subjectively measured when instrumental assessment is not available and the 'candy sucking test' cannot be recommended because there is an inherent choking risk. Conclusions & Implications: EDS difficulty in early‐stage dementia can be highlighted by indicators that could be combined to create enhanced pathways to support the early identification of EDS difficulties for people living with early‐stage dementia with a view to preventing complications and facilitating informed discussions regarding wishes in the event of further deterioration. Exploring the experiences of people living with dementia and their families' perspectives on potential indicators of EDS difficulty may add to the existing evidence base. WHAT THIS PAPER ADDS: What is already known on the subject: Early identification of EDS difficulty in early‐stage dementia may prevent complications, but more reliable and clinically measurable indicators of EDS difficulty are needed to help develop pathways to support diagnosis. What this paper adds to existing knowledge: A comprehensive range of studies related to EDS identification in early‐stage dementia have been selected and reviewed. Across six included studies, the most promising indicators of EDS difficulty in early‐stage dementia included delayed oral transit, poor rinsing ability, presence of sarcopenia and polypharmacy. What are the potential or actual clinical implications of this work?: This study could help to develop pathways to support the early identification of EDS difficulties for people living with early‐stage dementia with a view to preventing complications and facilitating informed discussions regarding wishes in the event of further deterioration. [ABSTRACT FROM AUTHOR]

Aims and Objectives: To synthesise information about the needs of older people with dementia from culturally and linguistically diverse backgrounds living in residential aged care from the perspectives of the residents, families and care staff. Background: Older people with dementia from culturally and linguistically diverse backgrounds living in residential aged care have care needs that are complex. Identifying these needs is critical to ensure quality care is delivered. Design: An integrative review of literature. Methods: Five databases were searched for relevant articles: APA PsychINFO, CINAHL, MEDLINE, Scopus and Google Scholar. The search and screening were guided by PRISMA guidelines and Whittemore and Knafl's five‐step framework. Results: Fifteen papers were included in this review consisting of 4 quantitative, 9 qualitative and 2 mixed method studies. Two themes described the needs of older people with dementia from culturally and linguistically diverse backgrounds living in residential aged care. The first was related to culture‐specific needs, and the second was related to dementia‐specific care needs. Culture‐specific needs comprised of three subthemes: (a) common language, (b) traditional food, and (c) social and spiritual requirements. Dementia‐specific needs comprised of (a) focusing on comfort in addition to clinical requirements and (b) individualised care that addresses behavioural symptoms of dementia. Conclusions: Identifying and meeting the needs of older people with dementia from culturally and linguistically diverse backgrounds will improve quality care delivery in addition to increased caregiving satisfaction among residents, families and care staff, and the management of behaviours that characterise dementia. Relevance to Clinical Practice: Care needs of older people with dementia from culturally and linguistically diverse backgrounds living in the residential setting can be complex. Education and training of care staff including nurses must be considered so that provision of care is inclusive of the cultural and dementia needs for older people in residential aged care. [ABSTRACT FROM AUTHOR]

Dementia friendly (DF) is a term that has been increasingly used in the international literature to describe approaches that include and involve people living with dementia within their communities and wider society. How to support the involvement of people living with dementia to achieve dementia friendly care or support outcomes is an area that has begun to receive attention. We begin by introducing the concept of dementia friendly, the policy context and what has already been evidenced via prior reviews and conceptual discussions. We conducted a systematic review following PRISMA guidelines, resulting in the inclusion of nineteen papers that reported on the methods and approaches used to involve people living with dementia in achieving dementia friendly or supportive care outcomes. Five primary themes were identified: the potential of group-based activities to facilitate inclusion and engagement; achieving engagement in decision making; the value of developing tools to help service providers to engage those living with dementia in care decisions; the role of awareness raising and education to support the inclusion of a range of stakeholders in achieving DF support and care outcomes; the need for cultural and contextual sensitivity when seeking to engage stakeholders to achieve positive care outcomes. We conclude by considering how both the underpinning ethos of social citizenship and social inclusion need to be in place alongside a range of approaches that are adapted to fit local contexts and needs to enable the involvement of people living with dementia in achieving dementia friendly care outcomes. [ABSTRACT FROM AUTHOR]

Fall prevention and management of behavioural and psychological symptoms of dementia (BPSD) in long-term care (LTC) facility is a major challenge. The objective of this systematic review is to assess the evidence of digital technology in their management. All studies of English-language excluding case-reports were eligible for review. Databases chosen were MEDLINE, EMBASE, Scopus, Web of Science and PSYCINFO from January 2000 to June 2020. Downs and Black checklist was used to check for risk of bias. Papers with a focus in LTC setting, using digital technology as intervention for older adults with dementia, and with measurable outcomes (outcomes that are quantified, not descriptive) were included in the final review. Seventeen original papers (8 RCTs, 8 quasi-experimental and 1 mixed method) were included. Three articles examining position-sensor technology for fall prevention showed mixed results. Two showed no difference and 1 showed small reduction in fall after alarm removal but the positive effect might be due to bias. Overall, the sample sizes were too small to draw meaningful conclusion. Fourteen studies (9 pet robots of which 8 were robotic seal/PARO) were identified for BPSD and results were mixed. Overall, PARO might have modest benefit in BPSD compared to usual care but might be no better than plush toy with more hallucinations or delusions seen in advanced dementia. However, the significant heterogeneity in methodology (intervention intensity, lack of record in psychoactive drug use), clinical tools used (different BPSD scales, different digital technologies) and variability in outcomes made it difficult to draw clear-cut conclusion. Studies involving other digital technologies are scarce and in pilot phases; hence, conclusion is premature. One limitation of the review was that only 9 out of 17 studies were of good quality. The limited research work in position-sensors meant insufficient evidence to prove efficacy for their use in LTC setting. The possible modest benefit of PARO in BPSD (e.g. in agitation, apathy or reduction in psychoactive drugs) was off-set by possible adverse events such as delusions or hallucinations in advanced dementia. [ABSTRACT FROM AUTHOR]

Background and Objectives Amyloid positron emission tomography scans can enhance the accuracy of dementia diagnoses. However, the perspectives and experiences of people with cognitive impairment and their care partners undergoing an amyloid scan are less well understood. Therefore, this review aimed to identify and summarize qualitative studies exploring patient and care partner experiences of undergoing an amyloid scan. Research Design and Methods We searched Embase, MEDLINE, and PsychInfo in March 2024. Articles were screened for inclusion by 2 reviewers and critically appraised using the Joanna Briggs Institute Critical Appraisal Tool for Qualitative Studies. Data from the included studies were synthesized using thematic synthesis. Results We identified 10 papers from 6 studies. We identified 4 themes: (1) motivations for undergoing an amyloid scan, (2) experiences of receiving the result, (3) emotional responses to the result, and (4) actions in light of the scan result. Participants reported undergoing the scan to determine the cause of cognitive impairment. They described the information gained from the scan as helpful but struggled to recall the correct terminology or implications of the scan. Emotional responses to the scan varied depending on the scan result. In light of the scan result, the most common action was making advanced plans; however, this was mainly discussed among participants with elevated amyloid. Discussions and Implications Amyloid scans can provide useful and actionable information. However, learning the scan result could be distressing. Future research is needed to balance the potential benefits and harms of amyloid scans. [ABSTRACT FROM AUTHOR]

Background and Objectives Personhood is considered the cornerstone of person-centered care for people with dementia. However, there is little research on personhood in dementia care from the perspective of the person with dementia themselves. This article presents a qualitative evidence synthesis of the experiences and perceptions of people with dementia on personhood in dementia care. Research Design and Methods A systematic search of nine databases was conducted. In addition to initial screening, CART analysis was used to determine the most relevant papers. Thematic synthesis was conducted on 20 papers. The CASP tool was used to examine the quality of the included papers. GRADE CERQual analysis examined confidence in the review findings. Results People with dementia experience many changes due to the disease and the experience of being cared for in different settings. Personhood is affirmed through personal interactions with family, friends, other care recipients, and formal caregivers, as well as through continued engagement in social and occupational roles. Discussion and Implications The review has important implications for practice, regulation, and policy. The person and their personhood should be protected rather than undermined, and relationships should be enhanced not diminished by the formal care process. The focus should be on creating and amplifying opportunities for people with dementia to affirm the self through interactions with others and engaging in occupational and social roles to ensure continuity of self. [ABSTRACT FROM AUTHOR]

Purpose: One limitation of research that assesses the effectiveness of physical activity interventions for people with dementia is that most do not describe the intervention in sufficient detail to ascertain a theoretical basis or mechanism of action that determines the effective components. This paper aims to identify studies which evaluate the mechanisms of action of physical activity interventions for people with dementia, to further inform effective intervention development. Design/methodology/approach: Papers were screened for evidence of evaluation of specific forms of physical activity, using pre-defined inclusion criteria. Analysis was conducted to ascertain if mechanisms of action were corroborated by data within and between studies. Findings: The authors identified 26 studies with a measured mechanism of action; these related to the effects of physical activity on either neurological structure or endocrinal markers, including hormones. Physical activity had potential to reduce hippocampal atrophy, increase neural recruitment, activate the noradrenergic system and improve anti-inflammatory responses. While individual studies were hampered by small sample sizes, the body of evidence indicated that physical activity may have potential to delay cognitive decline. Practical implications: Mechanisms of action in relation to dementia and physical activity are likely to be multifaceted, and physical activity may be protective against progression in the early stages of cognitive decline. Physical activity may be of greatest benefit if incorporated into on-going lifestyle, rather than engaged in for short periods, and combined with social interaction. Originality/value: This paper is unique in its focus on the mechanisms of action of physical activity interventions for people with dementia. [ABSTRACT FROM AUTHOR]

Despite the rapid proliferation and emphasis on technology, the use of assistive technology among individuals with varying disabilities and age is different. This situation instigates the need for a systematic review to gain a realistic understanding of prominent issues, research trends and assistive technology applications with minimal bias. Identification of leading researchers and prominent publications in assistive technologies. Subsequently, semantic relation between qualitative and quantitative research literature on assistive technologies was explored to future research directions. A manual search across reputed research databases was done to find out relevant literature from January 2005 to April 2020. In this paper, latent semantic analysis (LSA) was done to develop an information model for achieving defined objectives. A corpus of 367 research papers published during 2005–2020 was processed using LSA. Term frequency, inverse document frequency of high loading terms provided five major topic solutions. Marcia Scherer, Rory Cooper and Stefano Federici are most noticed authors in assistive technology research. "Smart Assistive Technologies" and "Wearable Technologies for Rehabilitation" came out as contemporary research trends within assistive technologies. The manuscript concludes the fact that assistive technologies for rehabilitation are experiencing a transition from standalone mechanical devices towards smart, wearable and connected devices. Customized assistive devices could be programmed for multiple uses. User data privacy and internet dependency of smart assistive technologies must be taken care of while designing smart assistive devices for rehabilitation. Fog devices could eliminate the latency issues associated with cloud-based rehabilitation services. [ABSTRACT FROM AUTHOR]

Introduction: People living with dementia experience communication difficulties. Personal information documents, or healthcare passports, enable communication of information essential for the care of a person with dementia. Despite the potential for providing person‐centred care, personal information documents are not ubiquitously used. The Capability Opportunity Motivation—Behaviour (COM‐B) model can be used to understand factors determining individuals' behaviours. Objectives: This study aimed to identify the barriers to and facilitators of the use of healthcare passports for people living with dementia through a systematic review methodology. Methods: A systematic search of six electronic databases was undertaken. Grey literature was searched using three databases. All study types reporting barriers to or facilitators of the use of personal information documents in the care of adults living with dementia in high‐income countries were included. Study quality was assessed using the NICE Quality Appraisal Checklist. Thematic synthesis was used to develop descriptive themes, which were subsequently mapped to the COM‐B framework. Results: Nineteen papers were included. Themes included training, awareness, embedding the process in norms and appreciating the value of the personal information documents. A broad range of barriers and facilitators was identified within each COM‐B domain. Conclusion: This framework provides a starting point for evidence‐informed initiatives to improve the use of personal information documents in the care of people with dementia. Patient and Public Contribution: This is a review of studies and did not involve patients or the public. Review results will guide evaluation of a local personal information document, which will be designed with input from the Dementia Champions Network (includes carers and other stakeholders). [ABSTRACT FROM AUTHOR]

Posttraumatic stress disorder (PTSD) is a prevalent disorder worldwide and often co‐occurs in dementia. Both have a major impact on disease burden and quality of life. PTSD may be difficult to recognize in dementia and a structured diagnostic method is lacking. In order to get insight into the clinical diagnostics of PTSD in dementia, this systematic literature review evaluates the clinical presentation of PTSD and other relevant symptoms in people with dementia. PubMed, PsycINFO, Embase, and CINAHL were searched for all publications through 30 December 2021. Articles were included which met the following criteria: (i) description of at least one case with a current diagnosis of dementia and co‐morbid PTSD; (ii) clinical presentation of symptoms being adequately described; (iii) no difference being made between chronic PTSD, PTSD with re‐activation, and delayed onset PTSD. Of the 947 identified abstracts, 13 papers met the inclusion criteria and were included (describing 30 cases). Based on our rating, only one case completely fulfilled the DSM‐5 criteria of PTSD. Avoidance was only described in three cases. Most commonly described symptoms were irritability and anger (E1, 9%), persistent negative emotional state (D4, 9%), and sleep disturbances (E6, 8%). In 93% of the case reports, other symptoms were also described, i.e. memory problems (58%), screaming (33.3%), and wandering (22.2%). People with dementia who have experienced a traumatic event seem to present, based on our rating method, with insufficient symptoms to meet all criteria for a PTSD DSM‐5 diagnosis. The DSM‐5 core symptom of avoidance was absent in most of the cases. Clinical presentation consists mainly of symptoms of irritability, anger, persistent negative emotional state, and sleep disturbances, often accompanied by other symptoms. These findings suggest that older people with dementia may have other symptom presentations than people without dementia. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to evaluate the effectiveness of psychological treatments and identify required adaptations to increase acceptability and improve outcomes for people with dementia or mild cognitive impairment who experience psychological distress. Design/methodology/approach: The Cochrane Dementia and Cognitive Improvement Group Specialised Register and other databases were searched for eligible studies. Inclusion criteria identified nine randomised controlled trials comparing a psychological intervention (cognitive behavioural therapy, relaxation training therapies, multimodal therapies, psychodynamic therapy, counselling and cognitive rehabilitation) with usual care, with measures of depression and/or anxiety as an outcome. The appraisal of papers was conducted using the Mixed Methods Appraisal Tool. Data was analysed using meta-analysis. Findings: A small, significant effect size before to after intervention was revealed, suggesting that psychological treatments may be effective in reducing psychological distress in people with dementia, with several therapy adaptations identified. Research limitations/implications: Because of methodological limitations and a small number of studies evaluated, the quality of evidence was low for outcomes for depression, and there were no significant outcomes in anxiety. Originality/value: The current review offers a unique contribution in identifying specific adaptations deemed helpful in improving the accessibility and acceptability of therapy for people with dementia, suggesting therapy can be adjusted enough to support this client-group. Future studies should use high-quality trials using standardised psychological interventions, of sufficient length, with long-term follow-up and offer of specific adaptations to increase accessibility and outcomes. [ABSTRACT FROM AUTHOR]

Aims: This review aimed to determine the characteristics of a nurse‐led intervention for people with dementia including mild cognitive impairment and their family in an ambulatory care setting. Background: Enhancing the role of nurses in a multidisciplinary team of ambulatory care follow‐up after a diagnosis of dementia is thought to lead to successful dementia care. Design This is a scoping review. Data Sources: MEDLINE, CINAHL, EMBASE, Cochrane, JBI, Japan Medical Abstracts Society, PsycINFO and Web of Science were searched on 14 March 2019. Review Methods: This scoping review was conducted using the Joanna Briggs Institute methodology, followed the PRISMA‐ScR checklist and considered studies that included interventions conducted by nurses and included outcomes regarding dementia symptoms or family care burden. Results: Eleven studies were included. Of these, all interventions were multifactorial and reported effective results. Educational interventions were most common, and the content of education included the characteristics of dementia and how to interact with patients with dementia. The roles of nurses included caregiver education, assessment, care plan creation for continuous monitoring and team building. Conclusion: This scoping review suggested that effective nurse‐led interventions in the ambulatory care of people with dementia are continuous patient and family supports, primarily caregiver education within multidisciplinary teams. Summary statement: What is already known about this topic? Roles of nurses in dementia care consisted of understanding dementia, recognizing dementia, effective communication, assisting with daily living activities, promoting a positive environment, ethical and person‐centred care, therapeutic work, responding to the needs of family carers, preventative work and health promotion and special needs groups.Outpatient nurse‐led interventions were not economically different from those led by doctors, but they produced better results regarding health‐related quality of life.Nurse education was an important factor in ambulatory dementia care. What this paper adds? Among the selected 11 studies, nurse interventions in interdisciplinary teams included assessment, care coordination and monitoring.Nurse‐centred psychological support is important in addition to determining the patient's condition and dealing with potential problems.Follow‐up for at least 6 months is important to determine a patient's condition, which is associated with a wide range of daily activities and psychiatric symptoms. The implications of this paper: It is important that nurses provide direct dialogue support, including a physical and psychological assessment of the patient's body and mind. [ABSTRACT FROM AUTHOR]

Aims and objectives: To systematically review and synthesise qualitative data from studies exploring the experiences of hospital staff who care for people living with dementia (Plwd). Background: In hospital, the number of Plwd continues to rise; however, their experiences of care remain problematic. Negative experiences of care are likely to contribute to poorer mental and physical health outcomes for Plwd while in hospital and after discharge. Experiences of the hospital staff who care for Plwd can also be poor or unrewarding. It is important to understand the experiences of staff in order to improve staff well‐being and ultimately the experience of care for Plwd while in hospital. Design: Systematic review and evidence synthesis of qualitative research. Data sources: We searched 16 electronic databases in March 2018 and completed forward and backward citation chasing. Methods: Eligible studies explored the experiences of paid and unpaid staff providing care in hospital for Plwd. Study selection was undertaken independently by two reviewers, and quality appraisal was conducted. We prioritised included studies according to richness of text, methodological rigour and conceptual contribution. We adopted approaches of meta‐ethnography to analyse study findings, creating a conceptual model to represent the line of argument. Findings: Forty‐five studies reported in 58 papers met the inclusion criteria, and of these, we prioritised 19 studies reported in 24 papers. The line of argument was that Institutions can improve staff experiences of care for Plwd by fostering person‐centred care (PCC). PCC aligned with staff perceptions of 'good care'; however, staff often felt prevented from providing PCC because of care cultures that prioritised tasks, routines and physical health. Staff experienced conflict over the care they wanted to give versus the care they were able to give, and this caused moral distress. When staff were able to provide PCC, this increased experiences of job satisfaction and emotional well‐being. Conclusions: Person‐centred care not only has the potential to improve the experience of care for Plwd and their carers, but can also improve the experiences of hospital staff caring for Plwd. However, without institutional‐level changes, hospital staff are often unable to provide PCC even when they have the experience and knowledge to do so. Implications for practice: Institutional‐level areas for change include the following: training; performance indicators and ward cultures that prioritise psychological needs alongside physical needs; adequate staffing levels; inclusive approaches to carers; physical environments that promote familiarisation, social interaction and occupation; systems of documentation about individual needs of Plwd; and cultures of sharing knowledge across hierarchies. [ABSTRACT FROM AUTHOR]

This paper provides a review of studies that evaluated technology devices to sustain various forms of mobility in older people with cognitive impairment or dementia and mobility problems (e.g., inability to ambulate or difficulties to orient with consequent failures to reach relevant destinations). A literature search was performed for English language articles indexed in PubMed, PsycINFO, and Web of Science. This search was then supplemented with an ancestral and forward search. The search covered the period ranging between January 2010 and October 2020. Twenty-seven articles were included in the review. They were divided into four groups according to whether they aimed to promote (a) supported ambulation, (b) use of safe power wheelchair, (c) ambulation guided by orientation cues, and (d) ambulation with GPS-based assistance. The studies were coded in terms of the objective pursued, technology used, participants involved, strategies applied to assess the technology, and outcome reported. A variety of technology devices are available to address the mobility problems of older people with cognitive impairment or dementia. The devices' accessibility and usability differ widely. Data on their impact are still largely preliminary and new systematic research is needed. A variety of mobility problems may afflict older people with cognitive impairment or dementia and curtail their opportunities to freely move indoor or outdoor. Technology devices have been developed to (a) promote forms of supported ambulation, (b) facilitate safe use of power wheelchairs, (c) deliver orientation/navigation cues, and (d) ensure tracking and possible assistance. The technology devices differ in terms of accessibility and affordability, with some of them readily available and others at a developmental stage. Data on the effectiveness of the various technology devices in reducing the impact of the mobility problems are still largely preliminary and new systematic research is needed. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to report on a scoping review of the advantages and challenges of extra care housing (ECH) provision in the UK for people living with dementia. Access to suitable housing is a fundamental right for people living with dementia and can enable people to live as well as possible (Twyford and Porteus, 2021). Understanding the advantages and disadvantages of different models of housing with care has been identified as a research priority by people living with dementia (Barrett et al., 2016) but "there is no current consensus on the best model of specialist housing for people with dementia" (Twyford and Porteus, 2021, p. 29). Design/methodology/approach: This scoping review identifies the advantages and disadvantages of living in ECH for people with dementia. It is the preliminary stage of a study that seeks to develop knowledge about different models of ECH for people living with dementia (Atkinson et al., 2021). Findings: Advantages include the promotion of independence, flexible staffing, safety and security, social inclusion, physical design and integrated service provision. Disadvantages include barriers to entry, tensions between independence and support, managing advanced dementia, resourcing flexible care, managing social exclusion, loneliness and stigma and a disabling environment. Research limitations/implications: The scoping review reinforces the need for further research into different models of ECH provision in the UK for people living with dementia. The review provides insight that is of benefit to all stakeholders involved in ECH and contributes to the development of evidence-based provision called for in the recent All Party Parliamentary Group inquiry (Twyford and Porteus, 2021). Originality/value: This scoping review summarises the current position for people living with dementia in ECH. [ABSTRACT FROM AUTHOR]

Purpose: The use of anti-dementia medication in people with intellectual disabilities has been controversial and requires additional research to assess the efficacy of such medications. An essential part of this treatment (both in terms of research and clinical practice) is having robust outcome measures to assess the efficacy of these medications for individuals. Currently there is no consensus in the UK regarding which outcome measures, in conjunction with clinical judgement, are effective in informing clinicians' decision-making regarding anti-dementia medication management and this paper aims to present useful outcome measures. Design/methodology/approach: A comprehensive literature search was conducted to identify relevant outcome measures. Outcome measures focused on aspects of patients' presentation such as cognition, activities of daily living, neuropsychiatric presentation or the impact of their presentation (either on themselves, or on others). These outcome measures were critically appraised to ascertain their suitability in informing clinician's decisions regarding management of anti-dementia medication. The focus of this appraisal was on good quality measures that are practical and accessible and can be easily used within clinical NHS services. Findings: This paper provides advice for clinicians on using appropriate outcome measures, depending on patients' presentations and the symptoms of dementia being targeted, that can be used alongside their clinical assessment to enhance their anti-dementia medication management. Two case studies are presented to illustrate the use of such outcome measures. Originality/value: The case for using a range of assessments that are both broad in focus, and those specifically selected to measure the areas of functioning targeted by the anti-dementia medication, is presented. [ABSTRACT FROM AUTHOR]

This article reports findings from a scoping review of the literature on good practice in social care for disabled adults and older people with severe and complex needs. Scoping reviews differ from systematic reviews, in that they aim to rapidly map relevant literature across an area of interest. This review formed part of a larger study to identify social care service models with characteristics desired by people with severe and complex needs and scope the evidence of effectiveness. Systematic database searches were conducted for literature published between January 1997 and February 2011 on good practice in UK social care services for three exemplar groups: young adults with life-limiting conditions; adults who had suffered a brain injury or spinal injury and had severe or complex needs; and older people with dementia and complex needs. Five thousand and ninety-eight potentially relevant records were identified through electronic searching and 51 by hand. Eighty-six papers were selected for inclusion, from which 29 studies of specific services were identified. However, only four of these evaluated a service model against a comparison group and only six reported any evidence of costs. Thirty-five papers advocated person-centred support for people with complex needs, but no well-supported evaluation evidence was found in favour of any particular approach to delivering this. The strongest evaluation evidence indicated the effectiveness of a multidisciplinary specialist team for young adults; intensive case management for older people with advanced dementia; a specialist social worker with a budget for domiciliary care working with psycho-geriatric inpatients; and interprofessional training for community mental health professionals. The dearth of robust evaluation evidence identified through this review points to an urgent need for more rigorous evaluation of models of social care for disabled adults and older people with severe and complex needs. [ABSTRACT FROM AUTHOR]

Objectives: This systematic review and meta‐analysis aimed to determine the prevalence of loneliness and social isolation among informal carers of individuals with dementia and to identify potential influencing factors. Methods: We conducted a comprehensive search across 10 electronic databases, including PubMed, Cochrane, Embase, Web of Science, PsycINFO, CINAHL, Scopus, Chinese Biomedical, China National Knowledge Internet, and WANFANG. Our search strategy covered the inception of the databases up to September 16, 2023, with an updated search conducted on March 8, 2024. Prevalence estimates of loneliness and social isolation, presented with 95% confidence intervals, were synthesized through meta‐analysis. Subgroup analyses and meta‐regression were employed to explore potential moderating variables and heterogeneity. Results: The study encompassed 27 research papers involving 11,134 informal carers from 17 different countries. The pooled prevalence of loneliness among informal carers of individuals with dementia was 50.8% (95% CI: 41.8%–59.8%), while the pooled prevalence of social isolation was 37.1% (95% CI: 26.7%–47.6%). Subgroup analyses and meta‐regression indicated that various factors significantly influenced the prevalence of loneliness and social isolation. These factors included the caregiving setting, study design, the intensity of loneliness, geographical location (continent), data collection time, and the choice of assessment tools. Conclusions: This study underscores the substantial prevalence of loneliness and social isolation among informal carers of individuals with dementia. It suggests that policymakers and healthcare providers should prioritize the development of targeted interventions and support systems to alleviate loneliness and social isolation within this vulnerable population. Key points: Informal carers of people with dementia contend with unique circumstances that render them susceptible to both loneliness and social isolation.There is a significant prevalence of loneliness and social isolation in informal carers of individuals with dementia.Several significant moderators influence the prevalence of loneliness and social isolation among informal carers of individuals with dementia.Moderator analysis can guide targeted interventions and support systems for at‐risk informal carers of people with dementia to alleviate loneliness and social isolation. [ABSTRACT FROM AUTHOR]

Patients with mild cognitive impairment (MCI) and dementia are more prone to depression than people without MCI or dementia. Some studies have found nonpharmacological multi‐component intervention to be more effective than single‐component intervention in improving the condition of patients with MCI and dementia; however, their effect on depressive symptoms is still inconsistent. Therefore, it is necessary to explore the effectiveness of nonpharmacological multi‐component intervention in improving depressive symptoms in patients with MCI and dementia. This review retrieved papers from PubMed, Embase, Cochrane Library, CINAHL, PsycINFO and CNKI. The retrieval time limit was set from 1 January 1990 to 25 November 2022. The PRISMA 2020 guideline was used to report the included studies. The result showed that nonpharmacological multi‐component intervention could improve depressive symptoms in patients with MCI and dementia. Among them, nonpharmacological multi‐component intervention with a duration of <6 months, physical and cognitive activities, or other activities had significant effects. However, each study differed in terms of specific measures, duration and frequency of intervention methods. Accordingly, more randomized controlled trials with larger samples are required to discover the best scheme for nonpharmacological multi‐component intervention. [ABSTRACT FROM AUTHOR]

Background Dual sensory impairment (DSI), the combination of visual and hearing impairments, is associated with increased risk for age-related cognitive decline and dementia. Administering cognitive tests to individuals with sensory impairment is challenging because most cognitive measures require sufficient hearing and vision. Considering sensory limitations during cognitive test administration is necessary so that the effects of sensory and cognitive abilities on test performance can be differentiated and the validity of test results optimized. Objective To review empirical strategies that researchers have employed to accommodate DSI during cognitive testing of older adults. Methods Seven databases (MEDLINE, Embase, Web of Science, CINAHL, PsycINFO, Global Health and the Evidence-Based Medicine Reviews databases) were searched for relevant articles integrating the three concepts of cognitive evaluation, aging, and DSI. Given the inclusion criteria, this scoping review included a total of 67 papers. Results Twenty-eight studies reported five categories of strategies for cognitive testing of older adult participants with DSI: the assistance of experts, the modification of standardized test scoring procedures, the use of communication strategies, environmental modifications, and the use of cognitive tests without visual and/or auditory items. Conclusions The most used strategy reported in the included studies was drawing on the assistance of team members from related fields during the administration and interpretation of cognitive screening measures. Alternative strategies were rarely employed. Future research is needed to explore the knowledge-to-practice gap between research and current clinical practice, and to develop standardized testing strategies. [ABSTRACT FROM AUTHOR]

Walking outdoors has many benefits which can improve quality of life for people living with dementia. However, due to the risk of getting lost, many people with dementia are denied the opportunity to be outdoors. There has been increased interest in using global positioning systems (GPS) to facilitate independent outdoor mobility for people with dementia, but this interest has been accompanied by ethical debate focussing on the rights of an individual with dementia to maintain privacy and autonomy. The objective was to establish what people, those with dementia, those who provide support for people with dementia and wider society perceive to be the issues around GPS use. Method: An adapted qualitative systematic review was conducted between November 2018 and December 2018. Medical, social and technological databases were searched for papers with no date restriction. Initial search terms displayed nine hundred and sixty citations. Titles and if necessary abstracts were read to determine which studies might be potentially relevant. Forty papers were identified as potentially relevant and their abstracts and references examined. This produced a further four potential studies. Following application of the exclusion criteria thirty papers were eliminated.Fourteen were accepted, appraised and thematically analyzed. Results: The ethical debate was reflected in the opinions of the study respondents. There was a willingness to relinquish some privacy for safety but people with dementia were not prepared to sacrifice their autonomy—believing they alone should decide whether GPS was appropriate. Conclusion: GPS was felt to have the potential to facilitate independent outdoor walking, but systems need to be tailored to the individual. There is also a need to contradict negative societal perceptions of the ability of people with dementia to live a fulfilled life which is in danger of diminishing GPS's potential to improve quality of life for people with dementia. Whilst dementia is a disabling and incurable disease, taking advantage of technological developments such as GPS can diminish its negative impact. Appropriate development and use of GPSs offers the potential to enable people with dementia to explore the outdoors independently with subsequent improvement in self-confidence, independence and autonomy. Professionals working with people with dementia need to be aware of the GPS technology available and the ethical issues involved to support the use of GPS. [ABSTRACT FROM AUTHOR]

Background: Adults with intellectual disabilities are an at‐risk group of developing dementia. In the absence of a cure for dementia, emphasis on treatment is the promotion of Quality of life (QoL). The aim of this review is to identify and describe QoL tools for people with intellectual disabilities and dementia. Method: A systematic review was carried out using 10 databases and papers from up to March year 2021. Results: Two instruments were identified and examined. The QoL in late‐stage dementia, which showed evidence of good levels of internal consistency, intra‐rater reliability, test–retest reliability, and convergent validity. The Dementia Quality of Life – proxy was also used; however, its psychometric properties have yet to be studied within the intellectual disabilities population. Conclusion: It is recommended instruments should be developed and psychometrically tested specifically for adults with intellectual disabilities and dementia to help inform policy makers, measure outcomes of interventions and personal outcomes. [ABSTRACT FROM AUTHOR]

Background: People with moderate to advanced dementia living in residential care are at risk of occupational deprivation. Person-centered care has been adopted as a guiding principle in the provision of residential care for older adults with dementia. In this context, there has been shift in occupational therapy practice from addressing occupational performance towards focusing on meaningful engagement. While both meaningful engagement and person-centered care have been well researched the relationship between the two concepts is poorly understood. Aim: A critical interpretative synthesis was conducted to determine how principles of person-centered care inform occupational therapy practice in relation to promotion of meaningful engagement among residents with moderate to advanced dementia. Methods: A systematic search of research addressing meaningful engagement of people with moderate to advanced dementia identified 26 papers. Results: Papers were classified as theoretical papers and empirical research. Two overarching constructs emerged, namely promoting a culture of collaborative care and understanding the resident as a person with a past, present and future. Conclusions: Occupational deprivation prevails and person-centered care is not fully addressed if opportunities for growth and engagement for residents with moderate to advanced dementia is not extended beyond their life history. Significance: Creating continued opportunities for building agency of residents with dementia could promote occupational justice in residential care. [ABSTRACT FROM AUTHOR]

This systematic review examined how information communication technologies (ICT) has been used to access remote post-diagnostic support that address the needs people with dementia, or those of dyad, and explored care recipients' views on accessing support remotely. Concepts relating to dementia and ICT were searched across six databases (PsychInfo, PubMed, Cochrane Library, CINAHL, Social Care Online, and Web of Science) in March 2021 and updated in March 2022. Studies published from 1990 and written in English, German or French were considered for inclusion. Methodological quality was appraised using the Hawker quality assessment tool and reporting structured according to PRISMA guidelines. The search yielded 8,485 citations. Following the removal of duplicates and screening processes, 18 papers reporting on 17 studies were included. Studies described a range of post-diagnostic support, including medical follow-ups and therapeutic sessions, and were often delivered on a one-to-one basis via videoconferencing software. Whilst often relying on assistance from unpaid carers, people with dementia directly engaged with ICT to access post-diagnostic support in 13 studies. Accessing post-diagnostic support remotely appears feasible, nevertheless, care recipients' views were mixed. Access was frequently facilitated by supplying devices and providing ongoing technological support. Accessing post-diagnostic support remotely is likely to benefit some care recipients, however, to prevent widening inequalities in access, services within the current hybrid landscape need to accommodate to people who are digitally excluded. Future research should capture the support provided by unpaid carers to facilitate the engagement of people with dementia to remote post-diagnostic support. [ABSTRACT FROM AUTHOR]

Effective and efficient search methods are required to retrieve robust evidence to inform the study of risk communication such as in dementia care. In this article, we draw on a study which appraised 12 bibliographic databases and one online search engine for this purpose by measuring their ability to identify relevant papers published up to December 2013 when applying a consistent search strategy on the topic of research on risk concepts and risk communication in dementia. We also searched reference lists of literature reviews. We retrieved 31 relevant articles. We took measures of sensitivity (ability to retrieve relevant papers) and precision (ability to avoid retrieving irrelevant papers), and we identified unique articles and the dispersion of relevant results when using database relevancy-sorting functions. We found that Cumulative Index to Nursing and Allied Health and PsycINFO had the highest levels of sensitivity; Social Services Abstracts, Social Care Online and Applied Social Sciences Index and Abstracts had the highest levels of precision. We rated Google Scholar (using the first 300 hits retrieved) third on sensitivity, seventh on precision, and found it had a more effective sort by relevancy function than any of the databases. We found that five databases and Google Scholar retrieved at least one study not identified by any other database. We found that none of the databases retrieved all of the relevant articles identified by that database within the first 25% of results when using the sort by relevancy function (where this was available). We concluded that it is necessary to use a number of databases for effective searching on this topic. The approaches we report in this article assist in creating a comprehensive search strategy and can be used by researchers to build social science risk knowledge methodically. [ABSTRACT FROM AUTHOR]

Studies about dementia in relation to the built environment have not always include patients with dementia as active participants. This paper presents a systematic review focusing on recent available literature on people with dementia as active participants in studies related to the physical environment. The aim is to analyze methods, adversities and challenges of their involvement. A total of 14 studies were reviewed. The results reinforce the fact that people with dementia offer unique insights. Data collection methods should be adapted for their inclusion as well as a more careful approach and a special attention regarding the consent of participation. [ABSTRACT FROM AUTHOR]

Background: The NHS dementia strategy identifies patient and carer information and support (PCIS) as a core component of gold-standard dementia care. This is the first systematic review of PCIS, performed to analyse the literature and evidence for these interventions. Aims: To systematically review literature evaluating the effectiveness of the provision of PCIS for people with dementia and their informal carers, in inpatient and outpatient settings. Methods: Searches of four online biomedical databases, accessed in September 2018. Studies were selected if they were: relating to people with dementia or their informal carers, based in inpatient or outpatient settings, published in English-language peer-reviewed journals no earlier than the year 2000 and assessed dementia-related information or social support interventions, by measuring qualitative or quantitative carer or patient-reported outcomes. Standardised data extraction and quality appraisal forms were used. Results: 7 of 43 full-text papers analysed were eligible for analysis. 3 papers were different arms of one original study. Trends were present in the quantitative results towards reduced patient and carer depression and anxiety and the themes in the qualitative analysis were in favour of the intervention. Conclusions: The studies analysed were too heterogeneous in design, population and outcomes measured to make a conclusive opinion about the efficacy of these interventions. It is surprising that for such a common condition, a gold-standard evidence-based intervention and standardised delivery for provision of PCIS for people living with dementia in the UK does not exist. Further research is therefore vital. [ABSTRACT FROM AUTHOR]

Objective:Individualized formulation-led interventions offer a promising approach for analyzing and managing challenging behaviors in people with dementia. Little is known about which individualized formulation-led interventions exist and what effects these interventions have on people with dementia and their caregivers. Therefore, the review aims to describe and examine existing interventions and to review their evidence. Methods:An integrative review of individualized formulation-led interventions for managing challenging behavior in people with dementia was conducted. PUBMED, PsycINFO [EBSCO] and CINAHL [EBSCO] databases were searched between February and April 2014 using key terms related to dementia, challenging behavior and individualized formulation- led interventions. The literature search was limited to German and English publications published from 1995. No limitations were placed on the type of paper, type of study design and stage of disease or setting. 37 relevant papers that met the inclusion criteria were included in this review. Results:The literature review provided 14 different individualized formulation-led interventions. The effects on people with dementia were diverse, as only half of the studies showed a significant reduction in behaviors compared with the control group. Family caregivers felt less upset about the challenging behavior and more confident in their ability to manage the behavior. Conclusion:There is a clear need for further research on individualized formulation-led interventions. The results of this review have the potential for developing interventions and for designing methodological robust evaluation studies that take into account the effectiveness of individualized formulation-led interventions on patient and caregiver outcomes. [ABSTRACT FROM AUTHOR]

Aims and objectives: To establish an understanding of healthcare professionals' dementia knowledge and attitudes towards dementia care, and family carers' perceptions of dementia care in China. Background: Healthcare professionals and family carers of people with dementia deliver most of the dementia care in China. However, little research on healthcare professionals' dementia knowledge and attitudes towards dementia care, and family carers' dementia care perceptions has been conducted in China. Methods: An integrative review was conducted and reported based on the PRISMA guidelines and Whittemore and Knafl's framework. Eight English databases were searched without date restriction: CINAHL Plus with Full Text, MEDLINE, PubMed, Web of Science, Cochrane Library, Embase, PsycINFO and Scopus; and three Chinese databases: China National Knowledge Infrastructure, Chongqing Weipu and Wanfang, plus a manual search of reference lists. Results: Thirty‐eight primary research papers were included in the review. Three themes were identified from the synthesis: (a) knowledge and competency; (b) attitudes towards dementia care; and (c) carers' burden and unmet needs. Healthcare professionals' dementia knowledge ranged from low to moderate levels and attitudes towards dementia care were generally negative. With low levels of knowledge of dementia and negative attitudes including stigma, family carers were under stress with insufficient support, and they expected more support from community nurses. Conclusions: There is an apparent need for a national policy on healthcare professional education and training to improve dementia care practice in China. Such a policy may improve support services for family carers. Relevance to clinical practice: Nurses, and particularly community nurses, are well‐positioned to support family carers in China. However, healthcare professionals in China are not prepared for this. Therefore, education and training on dementia care should be integrated into medical and nursing undergraduate programmes and provided for healthcare professionals after commencing employment, and strategies to reduce stigma are needed. [ABSTRACT FROM AUTHOR]

Case management is a complex intervention aimed at addressing a variety of health needs of people in their social environment. Case management for people with dementia is often poorly defined and insufficiently described. The crucial process steps are often not well understood. We aim to map and compare the key components, processes and contextual factors of case management programmes for dementia and to explore aspects of the interventions' generalisability. Our search covered the databases PubMed, CINAHL, Cochrane and GeroLit, as well as policy papers from international organisations. We included qualitative, quantitative and mixed‐methods studies in the English or German language that was published between 1999 and 2020. The programmes were analysed according to programme characteristics, case management intervention and the structural and processing conditions. We identified 67 studies dealing with 25 programmes. Approximately half of the programmes were investigated in randomised controlled trials, two programmes used a mixed‐methods design and the remaining were the subject of pre‐post cohort studies. Participants in the studies were predominantly dyads of people with dementia and their informal caregivers. About half of the programmes reported a theoretical framework. All the programmes were derived from case management approaches or referred to such approaches. Despite huge differences in implementation, all the programmes covered the case management steps. In 14 out of 25 programmes, case management was carried out without additional intervention, the other programmes provided mainly education and training for informal caregivers. Costs of the case management interventions were stated in more than half of the programmes.The effectiveness and generalisability of dementia‐specific case management interventions could be enhanced if the framework introduced in the review was used in the future by policy, practice and research. [ABSTRACT FROM AUTHOR]

Aim The aim of this study was to report on an analysis of the concept of pre-death grief in the context of dementia family caregiving. Background Research indicates that witnessing changes and losses in a family member with dementia can lead to pre-death grief. Pre-death grief is associated with depression, burden and maladaptive caregiver coping. However, the concept lacks a refined definition and blurs with similar constructs. Design Concept analysis using a hybrid of Penrod and Hupcey's principle-based concept analysis and Chin and Kramer's conceptualization of meaning. Data Sources 49 peer-reviewed papers (2000-2013) that addressed pre-death grief in dementia family caregivers were used for the principle-based analysis; two examples from the popular media were used for the analysis of conceptual meaning. Methods The scientific papers were examined for epistemological, linguistic, pragmatic and logical clarity. The two examples from the popular media were explored for conceptual meaning. Results Pre-death grief in the context of dementia caregiving is a meaningful concept found in the popular media. From a scholarly point of view, it is an emerging concept. A definition is offered to advance conceptual clarity. Discussion focuses on advancing the concept into a situation-specific middle-range theory of pre-death grief in family caregiving. Conclusions The concept of pre-death grief has salience for researchers and caregivers. This analysis lays the foundation for use of the concept in nursing research and practice across cultural, environmental and illness domains. [ABSTRACT FROM AUTHOR]